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Wednesday, September 28, 2016

I was reminded in some reading I did recently of the scripture in Joshua when he said to his discouraged people...

"Sanctify yourselves; for tomorrow, the Lord will do wonders among you."

I realized, after some thought and pondering that I cling to this hope more than I recognized. There are days, a lot of days, even most days, when all I see is the lousy world in which we live and exhausting effort it takes to live in this lousy world, it's hard to see anything better coming tomorrow.

So, I try to see the wonders of the day. Sometimes, the wonder I find is lame but it's a start.

But this week, I am in wonder at my kids. Shelbie is doing a remarkable job with her photography. She truly has a gift. People call her the baby whisperer because she is so amazing with all her newborns. She has been really busy this month and books up weeks and weeks in advance.

Spencer has been working to get his videography business going and so far so good. He has a wedding already done and two this weekend and a few scheduled for the remainder of the year. It's awesome to see him moving forward in life despite all the things he has had to go through this past year.

Sam has been surprising me daily. He spent an afternoon last week getting all applied for College. I was so shocked when he announced to me that same evening that it was all done- even the essay part! He is also getting things in order to open a missionary application. We are thinking by November, when he gets all his biopsy stuff and other check ups out of the way, he will be sending in the papers to see if he might be eligible to serve.

That's about it. Spencer is still experiencing some pain and discomfort from the loop recorder procedure. Here's the thing I don't understand...I get all these reports through MyChart and they say that the recorder is picking up all sorts of abnormalities but then they note that it is only significant if there are symptoms to go with it. Well, there are symptoms, but apparently not the kind that they care about. Only I care about the fact that he is dizzy and feels like passing out all day I guess.

Oh well, I'm done worrying about that, or at least I tell myself that. It's a wonder to me how resilient a human is and how we hope beyond hope for better days even when those better days don't arrive.

Check out Spencer's first wedding video...I love it. You can follow him on Facebook, Instagram and Vimeo...Mainstreamvisuals.com is his website.

Saturday, September 24, 2016

Spencer had his procedure done on Friday morning. It all seemed a little odd in a surreal kind of way.

We sat in the waiting room of the Cardiovascular Center at the University Hospital and the nurse came to take him back. I was surprised that I wasn't allowed to go with him. I think because everyone I talked to about this, made it sound like it really wasn't a big deal.

I hated sitting there watching him disappear at the end of the corridor. This place, I realized, stirs up some pretty traumatic emotions. Everyone is really nice but I really hate being here. There is a gentleman that works at the front desk checking people in; I think I need to add him to our Christmas card list because he sees us coming and waves like he's part of the family now!

I'm not sure if something was amiss for Spencer's procedure or if we have a different definition of 'no big deal.' He was awake for this procedure as well, with just lidocaine to numb him up.

Here's how I feel about this procedure after listening to Spencer's account of his morning...

If they have to cover your face with paper for a procedure....You should probably be asleep for it!

If the medical team can't maintain their poker face... You should probably be asleep for it!

If you have to listen to words like, 'Oops', 'Oh no', 'Wow', 'Shoot', or any verbal sounds indicating dismay...You should probably be asleep for it.

If the doctor says out loud, "I've never done this before on someone just skin and bones."...You should probably be asleep for it.

If the nurse says, "Oh, oh...are we going to have to stitch that part?"...You should probably be asleep for it.

If they have to bring in a staff member just to distract you with idle chit chat...You should probably be asleep for it.

Arghhh...It's annoying to me. We can now grow spare organs in a lab, do face transplants but we still haven't come very far in the managing of pain or suffering. When you already deal with daily pain from a chronic disease, you should get an 'escape from pain' free card for life! One hour of blissful, pain free sleep for procedures that can become difficult should be the least you can expect.

Spencer said they had a really hard time getting the recorder placed and when they went to shoot it in place, after creating a channel for it to sit, it went beyond where they had numbed him, tore the incision and who knows what else. For some reason, they ended up giving him Epinephrine with the Lidocaine and that was bad news for him. And...they didn't even wipe off the betadine before putting the dressing on! So, now he has that irritation on top of the pain he is dealing with.

When the nurse came out to get me and Sam, she said the medical equipment team would give me an orientation of the device. When I walked in the room, Spencer looked wretched! He sat there shaking like he had just come down with a nasty case of Parkinson's. His whole body just quivered and his face was the palest, paper white which made him look nearly translucent. The medical team was almost finished teaching him about the device. I had no clue what they were talking about. I still don't. I think it was wrong for them to give important instructions to a kid in shock.

I was in shock. I just wanted to get out of there.

Spencer didn't do well all day. He was in so much pain and had no feeling in his right arm and couldn't lift his left arm. His chest was really swollen and red. It was worse than the bone marrow biopsy. He had a hard time taking a deep breath because of the pain.

It was a lousy deal. Still is. He still can't lift anything because of the pain. Not the easy procedure we were counting on.

After the procedure, we met with Pulmonology and she was nice. I like her because she actually listens and seems to care. She suggested she schedules a team meeting with all of our docs in one room so they can all get on the same page. Wouldn't that be a novel and exciting idea. I'm not going to hold my breath though. She also wanted me to talk to a social worker about the stress we are under as a family but I denied that we are under any stress. Sometimes, the lies just roll off my tongue with such ease.

No new information on the boys other than a new Asthma med for Spencer.

I've been sick this weekend. Between a bout with vomiting trouble this morning and Lupus getting away from me, I couldn't even get out of bed til early afternoon. It's been a long, hard day. My kids rarely experience me sick so when I do feel bad, I think they think I've got one foot in the grave. I'll admit, it feels weird to be down. I'm not use to it myself.

Wednesday, September 21, 2016

We made it to Salt Lake tonight after a crazy drive! It's been a long time since I have driven in such a horrible storm for nearly three solid hours! The rain was coming down in sheets and the wind was driving it across the highway in gale force, gusts. Lightening surrounded us. Bolts of lightening drilled into the ground in groups of 3-5 bolts, while others dashed across the sky above us. The flashes of light against the moonless sky was blinding. At times, I couldn't even see the lines in on the highway that were quickly drowning as the road turned to river and I lost traction several times. I tried to follow the tail lights of the car in front of me but they were headed off the road so I hugged the rumble strip and held the steering wheel just a little tighter.

Sheesh! That was the longest, horrible drive EVER!

This week has turned out better than I anticipated. Sam's procedure to remove his toenail for the second time went alright. The doctor was perplexed as to how it became so diseased. Sam had it removed the first time two years ago due to cellulitis that was under the nail. We thought it had been cleared up but I guess not. It hasn't been the same and the rare times he complained about it, I forgot to make the appointment to get him in. It just finally got out of hand and I get the bad mom award for leaving it too long! I should have known better than to let it go, especially in a kid without an immune system to speak of. He has managed the pain really well.

Since our trip to Utah last week, I have seen little bits of blessings here and there. On our way home last week, Shelbie was hit by a tire on the highway. It did some significant damage to the front end of her car. All week long, she has referred to that accident several times, saying things like, "The other reason I think I was blessed..." and will then proceed to state why that was a blessing. Her ability to see past the negative things was inspiring to me. She really was blessed and the car can be fixed.

Last week, while I was visiting with my cousin at Huntsman, she said something really interesting. Before her husband left their hometown to obtain treatment at Huntsman, she challenged people in her ward to listen to the spirit and if they had a thought to do something for her family or anyone else, then they should act on that so that she wouldn't have to ask for help. She then went on to share so many examples of when they were blessed because people acted on their first impressions. The help always came before she had to ask.

I thought about how many times I ignore a feeling or impression and how many times someone else may have suffered needlessly because for whatever reason, I didn't do what the Spirit was prompting me to do. I decided to try and do better this week.

In some cases, what I felt impressed to do was more than just a phone call and put me back a few hours in what I needed to get done for the day but somehow, I managed. I noticed that everyday since last Friday, I have been led to help someone or connect with someone. Without a doubt, even the little text messages I felt impressed to send, made the biggest difference to the receiver but it kept me going too. I think that has made all the difference in how this week could have gone.

Today alone has been rough in terms of financial garbage but rather than fall apart, I kept it together. I received a collection letter and got a phone call from a different hospital from Spencer's Salmonella days. They were demanding payment while I was talking to them. They somehow think it's okay to wait for nearly a year before even sending out the first bill. I haven't even had the bill in my hands for 15 days and they are demanding payment in full. I politely laughed at her request...as opposed to getting rowdy with her. So, that's an improvement this week! ;) Sigh...it will go in the Overwhelm pile of bills that might get paid before I die.

At any rate...despite the ongoing trouble, I think we will make it through! Actually, it could be so much worse. I've been struggling with my health since last Saturday. I thought is was just a Lupus flare and kept me in bed most of Sunday, by Tuesday night, I ended up with this crazy, painful rash on my back and my first thought was Shingles and I was horrified at that thought! By this morning, it was clear that it's Lupus and not Shingles. I'm not sure why that seems much better in my head but it does. I can barely move and nerve pain from the rash is rough and my kidneys are on fire but this too shall pass...I hope. Anyways, I'm vertical so that's all that matters. A little bit of a blessing that I can keep moving and keep doing what needs to be done this week.

Sunday, September 18, 2016

On our way home from Salt Lake on Friday night, Spencer finally closed his eyes and slept. For the first time ever, on a long drive home, there was no sound in the car, not even the radio. There was nothing to drowned and distract my thoughts.

I had a lot of time to be still and stay with the feelings that rolled over me in complete and utter overwhelm. I had a thought or two about our situation, I mean, different from my usual report of being bone, soul tired.

I had this thought a couple of months ago but I remembered it again as I was driving. We are certainly in a situation that is, in every way, shape and form, beyond our control. I know this is a truth but still, there are days I wonder if even God has control of things going on down here for us. He does. I know he does but my weak, human side sometimes wonders.

This year, as hard as God has been trying to teach me this principle, I've been fighting him all the way.

Brene Brown

I have absolutely no interest in living this life anymore. I have absolutely no interest in watching this disease process unfold. I have absolutely exhausted my resources...every resource. Even the people around are exhausted just reading our story I think. I have done absolutely everything I can think of to avoid all the hurt and struggle. I absolutely hate feeling weak and out of control.

So...God finally found a way to one up my independence!

As the mile posts crept by, I decided to let God in on my little secret...I'm not finding much joy in this journey or did he mean that literally that men are that they might have joy but mom's...well, it was never meant to be easy. Cause the latter is certainly more true than finding much joy these days. Somehow, in these ponderings, I decided to give up.

Give it all up. I can't do this anymore. I don't know what to do for my kids anymore. I don't know what to do with all the differing opinions from doctors who really don't know much more than I do! It has gotten to the point when I really can't even see how I will make it another hour, let alone another day. So, I just handed my life and all the complexities back to him.

In that mental process, I found some clarity. We are hardwired for struggle. That's the point to being here, to grow and growth only comes in struggle and opposition.

After that, I felt 110% better~ magically infused with energy and hope and that all elusive joy!

Actually, I didn't feel any of that! I just felt tired and I think my response to God was, "Really...I'm not getting a break? Fine. I understand." I do understand but that doesn't mean it is easy. Just to solidify His message, it was right after this that Shelbie called with her hysterical voice after being hit by a tire while driving on the highway. All I could do was look Heavenward and offer up an endearing eye roll which I think made Him smile...

I have barely made it through the weekend. It's been pleading for help and strength on the hour I think. I don't have a clue how I will get through Sam's procedure tomorrow, Shelbie's on Wednesday, Spencer's on Thursday and somehow, avoid getting fired because I can't do it all. But I am putting God to the test. I'm going to work steady when I can and take care of my kids when I need to and hopefully, get a little sleep and rest.

As I stay in the wrestle and rumble, I hope I can keep my heart tuned to Him and in return, I know his mercies will continue to stream through our family.

This week, I will try to remember this...I know that God would probably like to take this away but can't short change us on our learning and growth. It's my little Gethsemane...

Saturday, September 17, 2016

Who decided that a mother sets the tone for the family? How is this even fair?

I guess this was the whiny me thinking this. Maybe it would be different if I had a significant other to share this load with, some tag team player so that when I needed to tap out, someone else could step in.

The past week was painfully difficult, it was just one setback after another. Spencer and I left for Salt Lake on Thursday night and drove straight to our hotel and crashed. We had spent the morning doing testing at the local hospital and that in itself took nearly three hours.

Friday morning, we arrived early for his bone marrow biopsy. The nurse told me the day before that if we were 15 minutes early we were late. So, we got there a full hour before his appointed time and waited an hour and a half! We had a nice visit with an elderly man in the waiting room.

When we got in the room where the biopsy was to take place, it quickly became evident that he would actually be wide awake and alert for the biopsy! I was so bugged! I really was not happy. I made such a huge effort to make sure he would be sedated. All they gave him was some Fentanyl and Versed which does absolutely nothing for my kids. He was very much awake and aware and still remembers everything.

I had a very hard time watching the procedure. I have sat through more than a few dozen but my kids were always fully sedated so knowing they weren't suffering, made it easy on me. This was not good for my fragile mamma heart. Spencer was a champ! He even had to have it done twice because strangely enough, the first puncture, no marrow came out. With the second puncture, only bubbles came out at first. It was very strange.

The nurse practitioner draws out the marrow from the back of the hip bone.

The steel hollow needle sticking out of Spencer's bone is about 1/8th of an inch in diameter and gets screwed into the bone and from that, the marrow is sucked out and a portion of the bone is taken out. His piece was about 3/4" long by 1/8". It was a pretty good chunk. He's awake for this!!! Insanity! All because insurance companies and hospitals care more about their pocket book than patients...at least that is how it feels.

This was the needle going in deeper to get the biopsy portion of the bone fragment. It takes a lot of muscles to do this procedure.

Slides and tubes of marrow. In total, she drew out 6 syringes of marrow.

It takes the lab tech nearly a full hour to prepare the slides.

Spencer trying to sleep off the drugs and pain afterwards.

Once his vitals were stable, they let him go. Aside from the lack of sedation for the test, this was much better than when we did them in Seattle. The staff there was grouchy every time! This team was fun and lighthearted which eased some of the tension in the room.

We took Spencer downtown to get some food since he had been fasting but had to return for his pacemaker consult.

That was a confusing and frustrating visit. Basically, they still don't have enough data to feel convinced that a pacemaker is the way to go for him. The doctor wants more information and so next week, Spencer will have a small procedure to place what is called a Loop Recorder in his chest. It is basically a permanent EKG monitor. The battery lasts three years, so in theory, that's how long he will have it in place.

This is the Loop Recorder.

They are also going to start him on a medication to increase the pressure in his arteries. The doctor isn't sure if we have an electrical issue or a neurological problem or a cell exhaustion problem like Mitochondrial/Telomere issue.

One thing they do know, is that as Spencer moves around, his heart can't maintain a regular pressure. In normal people, when the blood pressure drops, the heart rate speeds up to counteract the effects. In Spencer, they have found that when his blood pressure drops, his heart rate drops quite low. When it happens, the blood can't get back to his heart or his brain from his lower extremities and so the brain shuts things down in order to save the organs...that is when he loses his vision, blacks out, passes out...etc.

It is the doctor's hope that by increasing the 'bloat' and pressure in the arteries, the heart rate will keep up better. We'll see. It is just an experiment because they really have no clue! As usual.

When we were finally done, 9 hours later, we went upstairs at Huntsman to visit my cousin and her husband. He had been having a pretty rough week and two weeks since he received his bone marrow transplant, so while he napped, we sat outside the lounge area and visited. From where we sat, you could still see down the hall to her husband's room. Not long into our visit, we heard the most stunning commotion. A woman was screaming, nurse's yelling and the code red alarms blaring. It sounded like a table overturned and nurses and other hospital staff were running frantically through the halls. It wasn't long before there were more than 20 people working on a man to bring him back to life.

I immediately went to panic mode. I really just wanted to run as fast and far as I could. It made my heart ache for the man and his wife who soon emerged to a chair near us where she was calmed and supported.

It was a traumatic day in so many ways. On our long drive home last night, I got a hysterical call from Shelbie. She had been hit on the highway and it did some significant damage to her car.

Today has just been another long and difficult one. On Monday, Samuel has a horrible procedure to get through here and then we have another long day towards the end of the week, back in Utah for Spencer's heart procedure and both boys will see if there is any hope or help to improve their lung function as we visit with the Pulmonologist.

Sunday, September 11, 2016

This post was going to be about my almost perfect day! I was going to spend an hour or more talking about Saturday when Spencer and I ran away to Bannack State Park in Montana.

I was going to say how happy it felt to be in the middle of nowhere walking through a completely abandoned town that was once a flurry of life during the late 1800's and the Gold Rush.

History stood still and if you were quiet, you could hear the walls, whispering promised secrets of the people who lived there. The floors bowed and groaned under pressure from the intriguing stories the walls were built upon over the years since it had been forgotten. And Grasshopper creek looked more like it should be named Coffee Creek as it crept along in deep rich tones of gold and copper and birds hid in the tall grass and my world was quiet and still and worries floated down the creek and around the bend from where I stood.

And, I would have spent a dozen paragraphs in thought about how wonderful it was to see Spencer enjoying the day too and sharing in this memory and getting the coolest video clips for his next video masterpiece. He has an eye for the art of video.

Instead, of that story, another story is begging for attention.

The story of how Shelbie was living life and loving life and laughter and fun, filled her Saturday night until it was bulging with happiness. That is, until she was struck with overwhelming, knee dropping chest pain that led to her arm and into her jaw.

I was calm, maybe too calm to instill confidence that I would and could take care of her. Even though her history of arrhythmia, holes in her heart, pulmonary embolisms begged a different response, I was calm. I felt like things would be okay but all the same, what if it wasn't. I didn't want to be responsible for her demise because I watched and waited one second too long. After nearly an hour, as it was, we headed to the ER.

They did their thing. The process seemed slow and tedious and we had been burdening them for hours already when the doctor came in to deliver the diagnosis. He was a new doctor. One we have never met and my heart felt a little disappointed that he didn't know us but maybe that really didn't matter.

Shelbie was not having a heart attack and there was no sign of a blood clot passing through either. Instead, the doctor began a soapbox of convincing rhetoric on the virtues of panic and anxiety and it really isn't something to feel ashamed of so he loaded her up with an IV full of Ativan. Surely, in such a condition, this would be the correct treatment. But, it wasn't. Her pain increased and spread and it was like nothing she had experienced before and she repeatedly offered that information.

Still, he was not convinced. He began again, to preach on how it makes sense she would be so out of control and panicked, who wouldn't be given the life she lives and the complications? But she wasn't panicked and out of control. She wimpered softly to herself, not in heaves of drama.

And so I said, "I agree that anxiety and panic can have the effects you describe but this is real pain not caused from anxiety or panic. She handles her life just fine. She was having fun. I don't see this as an anxiety issue."

Immediately, he raced to dismiss my thoughts and the last thing I will do is engage in a fight with an ego. I retreated to myself and in that moment, I realized that he wasn't even seeing us. We were invisible to him. His ER wasn't about speaking your truth, it was about validating his. He was good at his game and soon, I felt small and embarrassed and too big to be in that room and my elbows wanted to stretch through the walls and when he stepped out, I wanted to explode and ricochet against the walls . I wanted to make sure he saw us and heard the ruckus and rumble I was capable of. I wanted to rip out her IV and snatch her from the bed and storm out with my daughter in my arms.

I felt like I was going crazy and I doubted everything I knew about my life, about her life about the disease. I wasn't even sure what was real and what was not. My insides did not match my outsides and down the rabbit hole we went.

I am so very tired of every discomfort we feel, being wished away by the world and the people around me. I am so tired of being invisible to people. I'm tired of the shoulder shrugs and the distance people keep from us. I'm tired of people walking around us like we don't exist because they don't want our messy life encroaching on theirs. It's the equivalent of people saying how are you, and when you say you are falling to pieces and dying inside, they say, "Good. Good to hear." They didn't hear. They didn't see. They didn't care.

And when he came back in for round two of his argument for anxiety, all I could do was wish his mouth would stop running. He was condescending but sweet. He was passive and knelt beside her bed yet aggressive and he was right and I was wrong and Shelbie was sick.

"Listen, you are going to go home and get some sleep but if anything doesn't feel right or doesn't go away, then you need to get in here right away. I can't guarantee you won't have a heart attack or pass a blood clot. Okay?" With those completely stupid words, we were handed the discharge papers at nigh on 3 am.

And in the folds of my angry breath, I said, "She didn't feel right. She still doesn't feel right and all the Ativan in the world didn't change her symptoms." But those words coiled back into my throat and I choked back the tears as I left to get the car.

There is nothing worse, when living with a chronic disease such as this, in feeling 'other'; invisible. We walk with one foot in your world because we have too and cling to ourselves in our lonely other world and that is harder than anything else we have ever had to do and I don't quite get it. And this may very well be the most raw, honest words I have ever uttered about living this life and I may live to regret it.

But alas...such is life...raw, real and honest.

Shelbie is still not doing well and I don't really know how to keep her comfortable. Maybe this disease has finally gotten the best of us, grown beyond what we are capable of caring for.

I will probably retreat this week from too much writing and gather some strength for our nail biting trip to Utah at the end of the week for Spencer's pace maker/defibrillator consult and his bone marrow biopsy. When interactions like we had this weekend happen, I get easily lost in the mix and quite honestly, lose faith in humanity for a while and it's just better to be alone. Sometimes, I don't recognize this world or the people who inhabit it and I wonder what in the world I am doing here.

A year ago today...we got a brand new Maverick gas station at the end of our street. It's the only gas station we frequent now and by frequent, I mean, we are there every day! We are gas station junkies...what can I say.

Anyhow, there was always one lady that seemed like she carried the weight of the world on her shoulders and she kind of showed it with a permanent scowl on her face. No matter how friendly any one of us tried to be, she didn't care to smile. She was actually kind of frightening! And grumpy.

Shelbie always complained about this lady and her attitude but one day, Shelbie decided to just try to ask her a question and get to know her better because maybe...she had a good reason for being a grouch. So that is exactly what she did.

Long story short...We have become good friends, in fact, we even put her on the Christmas list last year and you would have thought we had given her a cruise to the Bahamas!

Early this year, when Shelbie got sick, this lady noticed that Shelbie wasn't going in anymore. On one trip that I made, the lady said, "Are you Shelbie's mom?"

"Yes, why?" I asked.
"She hasn't been in for a couple of weeks and I just wondered if maybe she moved."
"No, she's been sick and in the hospital. She had a small surgery that developed an infection."
"Oh. Is it serious?"
"Don't worry, she will be back in no time. I will tell her you asked about her."
"Well, like what kind of surgery. She is just so sweet, I'm a little worried."

That ended up being a 20 minute conversation about what was really going on. The lady was so moved by the situation. Now we are all good friends and in the moments while a transaction is made, we catch little glimpses into each other's life. I no longer see a grumpy, grouchy lady. I see a friend.

Two weeks ago, I was asking her how things were going and she said, "I was in the ER two nights ago. My blood pressure was so high and I was so sick!" She went on to say that the doctor told her she needed to eliminate some stress in her life. I was thinking her stress was maybe the job, long hours, but no, it was her mother in law. At first, I thought that was a crazy thing to be stressed about. She told me that she was going to take 8 days off to recuperate and figure out what to do.

I wished her my best and walked out to my car. So many things ran through my head. First of all, this was truly a serious situation to her. To me, it wasn't at all. I would spend maybe 2 or 3 days stewing and then let it go. I also noticed that she never once apologized to me for her seemingly trivial matter that was creating unhealthy stress for her. She treated her problem as serious and difficult as I treat mine.

This was an earth shattering moment for me. I rarely speak to people who don't feel obligated to discount their own troubles. They say things like, "Well, I know I shouldn't be complaining to you about this."

I hate that sentence more than anything! It makes me feel alienated and isolated and unapproachable. Not only that, it makes themselves feel weak and less than...

For 8 days, I had intensely deep thoughts about this interaction. She just got back to work and I asked her how the break was. For 15 min, she shared her life with me. She shared desperate moments she had with her mother in law and was honest and unapologetic that she was struggling so much and I had an awakening as I shared her burden.

Our stories are different, very different but the battle fatigue is the same and has taken a similar toll on each of us. I still, when I think of her problems, don't see that they are an issue but that is because they wouldn't be a trial to me. That's when I realized for the first time ever how it is that life is totally and completely fair.

I have always believed that...but couldn't really express how my very sick children is fair compared to someone else's quarrel with a mother in law. The circumstances don't seem fair at all when looking at the face value of both situations, yet if you look closely, the playing field is level and all is fair in terms of Godly work.

We have been blessed with so much! Not much at all in the standards of the world and physical things but spiritually, we are rich. Each little trial I have faced from a young child to now, built my arsenal of faith; a little bit here, a little bit there. In all that little by little we have grown and progressed so much. With each trial we became a bit stronger. The point to life is that we are always growing and stretching more and more. That happens in trial and tribulation. It just so happens that it takes so much more to test us than it use to.

Where much is given, much is required. The spiritual resources I have built up over time, far exceed my gas station friend's spiritual resources. Her testing looks much easier than mine yet she is being tested to the very same, exhausting degree because she has less experience to draw from.

I don't know what this woman's spiritual beliefs are but I know they are quite different from mine yet, I feel such a connection to her. I love that she felt like she could be honest with me and didn't apologize for her difficulties. I love that was brave and vulnerable and didn't have to pretend to be doing better than she was. There is so much I can learn from her.

This realization of how life is fair, was a monumental moment. I have struggled to understand this concept for years. It doesn't make these things we face any easier but the understanding helps. There is still much I don't understand about why the testing hasn't let up in 11 straight months and I can see no sign of it letting up any time soon. It doesn't make much sense to me but I have to continue to believe that it makes sense to God. I will certainly be watching for the day when I can look back on this year and see why it had to be this way.

I just wish I could convince my kids that things will get better soon enough. It's one thing for me to feel the effects of never ending refining in the fire of tribulation, but it's another thing to see the toll this is taking on my kids who just really need a break. I am really not sure how many more cliches and happy, hopeful memes I can throw at them in an effort to bind their little broken hearts.

Friday, September 9, 2016

Without a doubt this was one monumental birthday as far as I was concerned, I mean, given what we have faced with his heart this past month. I had all sorts of feelings and emotions on Thursday but didn't let them get the better of me. I wanted to feel happy and blessed that we were celebrating another year.

It brings me great joy to make a fun birthday cake for my family and friends who have become like family. I could never do it as a job or be hired out because that feels less fun to me. I try to think about their personality and create something meaningful for them. Sometimes, they give me input and help plan the details but sometimes they don't.

Spencer had no clue what he wanted and all along, I had planned to make a giant deli sandwich like one he had on his Make A Wish trip. It was enormous and he was in hoagie heaven eating it! At the last minute, I decided it made way more sense to make a skiing cake since he is my ski bum!

This was my ski bum, busting out of knee deep powder! I discovered I kind of like sculpting faces out of fondant!

Our good friends brought over a Cherry Chocolate cake as well and that is the one we actually cut. It was so good! (I forgot a picture...) Anyways, I was the only one who had cake. Everyone else was sick! Oh well, that's the way it goes around here lately.

Spencer is so fun to have at home. His humor will always be the thing that gets us through. He is so witty and funny and has a knack for helping his siblings through difficult situations. He has worked hard his whole life. He continues to press on, making the best of a very hard situation he currently finds himself in. He seems to be able to take things in stride and never slows down to feel sorry for himself.

I will never forget last fall when he was in the hospital with Salmonella. He didn't just lay there resting, he was teaching himself Adobe programs and creating art for his t-shirts. If it had of been me, I would be have sleeping off the pain and discomfort and complaining every chance I got.

In the past year, he has taught himself so many different software programs and has a great eye for photography and video. He has worked hard to get his video equipment purchased and is starting a visual media company. He is starting out with wedding videography but plans to expand his portfolio into more exciting venues, like sports.

Spencer is one of the hardest workers I know. Even since his heart event, he has been helping his friend's dad demolish an old house. The work is hard and the hours are long but he sticks with it. That is an admirable quality among many he possesses.

I am blessed to have a son like Spencer. He adds so much to our family and my life. Here's to another 22 years and more!

Wednesday, September 7, 2016

Oh wait, no I didn't...That was the Neuro-Opthalmologist I booked a visit with!

This secretary though, she wins some kind of award. I was super impressed because at one point, I really thought we were booking something fun!

She began with the usual questions like, "So, is this just a basic visit?" As if everybody books out time with a Neuro-Opthalmologist.

'Hmmmm, what should we do today kids? Who wants to go see the Neuro-Opthalmologist? Yay!!!"
" I guess, I mean, he has been having some issues." I actually said.
"Okay, what sort of issues?"
"Oh, he loses his vision for no apparent reason. He chills for an hour or so and it eventually comes back." I said,
"Oh Gosh! Okay, this just started?"
"No! It's been going on about 3 years. Maybe 4. It's not bad. As long as he isn't driving when it happens."

She laughed..."You are just now wondering what is wrong?"

"No, but our Oncologist thinks it's a problem we should address. He does have a cyst on his eye and a suspicious Nevus and he has the gene for Leber's Hereditary Optic Neuropathy...Hmmm, sounds like maybe I should have worried about this sooner!"

She laughed...

As she was looking for appointment times she said, "Now, I see you have a large group attending various venues here over the next several weeks, is there anyone else in your party who would like to visit us?"

Doesn't that sound like something fun the rest of us are missing out on?!! I have a group and a party!

She was really sweet and fun to talk to...I politely declined her offer to have all the kids attend the 'event' she was planning for Sam. The appointment will take 3-5 hours!! But, she assured me that Sam would be 'pampered' and at the center of their attention! So, maybe the rest of us will be real jealous of Sam when it's all said and done!

Before we finished, she said, "I realize it's none of my business but have you thought about moving to Salt Lake? You have a crazy schedule. Is this your job? Just shuttling to Utah?"

"Yes, this is my full time job, just waiting for nurses and doctors to call me and schedule appointments. I moonlight as a Designer, since I am the breadcrumb winner around here!"

Anyhow...it probably won't be much fun. I can't imagine 3-5 hours in one clinic is going to be thrilling, then the following day, he will attend an event at the Huntsman Surgical Theatre where he will have a front row private showing of the long playing classic- The Sun Will Come Out To- MARROW.

Monday, Spencer was feeling much better. Shelbie was feeling alright and Sam was awesome. They all got up and ready to go to the State Fair with their Dad and little sister.

They all looked so good and so happy, I couldn't let the photo op slip by. In one moment, for a brief second, I looked at them and caught my second wind just a bit. I know that people have endless reasons to judge me and have given words to their off the wall thoughts about me. Contrary to the popular belief... I care about them and care for them and will make any sacrifice necessary to see that they have the best life possible and a chance to experience a dream or two. They are fighters and they keep going regardless of what comes their way. I hope they see their own goodness.

I didn't offer them much in the way of healthy genes but they are good looking kids- though I'm pretty sure they didn't get it from me either, just a luck of the draw I think! But, like I always say, It's better to look good than to feel good! They love each other.

The appointments are being set up for all of our specialists and we almost have it all organized for the next couple of months. I had to laugh...A nurse from Huntsman's called me yesterday and gave me the lowdown on the appointments left to schedule and then she said, "I don't normally ask parents this but would you mind helping me make some of these calls?" She was very sweet and I have no problem helping out. In fact, it makes more sense for me to get involved so I can co-ordinate everyone's work schedules and other appointments near and far. I was happy for her thoughtfulness.

I have been feeling both stressed and blessed. I worry just a little every time Spencer leaves the house and Sam for that matter but I let them go and somehow, by the grace of God I can go on with my day and not dwell on the what ifs and maybes. That's huge. Not many people think I have it in me to let go.

Monday, September 5, 2016

It's not like this is the first time I am realizing that everyone hurts, it's just that it's the first time the thought has impacted me so much.

Yesterday, I listened to more than one person in different venues tell of how absolutely alone they felt in their heartache. I think it is becoming an epidemic. While we can't know everyone's heartache and we can't fix the heartaches we do know about, we can certainly try harder to offer a little more understanding and love and a little less criticism, advice and judgment.

We can't possibly know what it feels like to be someone else. We can't possibly say what we would do given the very same set of circumstances so it does no good to do anything but meet them where they are at. Sometimes, especially when there are no possible human efforts to fix a situation, just showing up to the front door of someone's life to witness their journey is more than a lonely, suffering heart needs.

I am realizing more each day that this is exactly what I need to learn with my kids. We are all dealing with way more than just health problems but those happen to the be problems I am more apt to talk about here. We are all feeling the same fall out from the same problems but in different ways. Very different ways... and we all handle the stress and anxiety, in our own creative ways. We are going through all this together...but alone. I can't possibly understand what it feels like to any one of my children. They will never understand what it feels like to be me.

Last night was sort of rough. Spencer had not been feeling well all day and had to come home from church early. He spent the better part of the day sleeping. By evening, he was really suffering. His heartbeat was incredibly slow and he was having a hard time feeling his lower legs, probably due to lack of circulation. As time wore on, he was out of it; could barely raise his hand to scratch his ear. His dad and I were really worried and wondered if we needed to take him to the ER. We deliberated for longer than we probably should have but around 10pm, I decided that the hospital wouldn't do anything but confirm what we already knew, his heart was irregular and slow. He has been having some pretty significant GI issues the past few days, worse than usual so I began to think that maybe he was suffering from some dehydration on top of it all.

In light of that thought, I ran to the grocery store and got some Gatorade, hoping that re-hydration with electrolytes might help somewhat. I had the feeling that maybe treating him like a Mitochondrial patient might be beneficial too. When someone with mito has a 'crash' or a 'brown-out', they can experience similar symptoms to what Spencer was feeling. I have been reading more and more about the connection between short telomeres and the mitochondria.

I followed through with my thoughts and hurried home. He was able to drink some and I got some Magnesium in him and a banana just to support his heart health and soothe his gut a little and then helped him to bed. This morning, he was feeling better and hopefully, he has a good day. It's a tradition that the kids and their dad hit up the State Fair on Labor Day.

Back to my original thought...I was glad that my kids are starting to realize that we all hurt and we all hurt differently. I was so glad to see them giving each other a little more slack and a lot more patience today as the morning didn't start out as planned. It's a journey and though we aren't perfect, we are trying.

Saturday, September 3, 2016

UNANTICIPATED...This is a fabulous word. I love it and it so wonderfully describes my life.

Not one thing I anticipated in life has actually happened. Around every turn, in every chapter and era of life, I have been surprised at what I got instead of what I wanted. I'm still reading Clayton Christensen's book, How Will You Measure Your Life?, he uses this word in terms of "unanticipated alternatives." When something different takes the place of what was expected.

I expected to have a pretty normal life. I expected that it would follow some prescribed course according to all the great expectations you find yourself surrounded by just because you live in this world. It's a world of abundance where anything is possible. Most people bank on the anything possible part with a generous portion of hope and accept nothing less than great things.

I didn't anticipate that today, I would feel so disheveled and distant from myself and others.
I didn't anticipate that my life would have veered so far in the opposite direction of 'normal' that people could no longer relate to me.
I didn't anticipate that even with a genetic disease, it would ever progress the way it has.
I didn't anticipate that someday, my kids would grow up.
I didn't anticipate that when they grew up, I would no longer be able to shelter them from the harsh realities of this world or the disease.
I didn't anticipate that I would be living my life on my own.
I didn't anticipate that you can be surrounded by people and feel entirely and wholly alone.
I didn't anticipate that grief could show up, unpack and make herself comfortable in your front room.
I didn't anticipate the power in a thought.
I didn't anticipate how much I want to shrink and disappear and disengage

In addition to these thoughts...

I didn't anticipate that my kids could handle so much and handle it with grace.
I didn't anticipate that my kids would find a way to get around their infirmities and still create a life.
I didn't anticipate that there is so much to be learned in the quiet moments of alone.
I didn't anticipate making it this far.
I didn't anticipate learning as much as I have.
I didn't anticipate that I my Faith could grow exponentially
I didn't anticipate that the love I once had for my kids pales in comparison to the love I have for them now.
I didn't anticipate that I could handle much more but I have and I guess I will.

I guess, what I've really learned, as I wrestle and struggle and continue to become, is that I don't know what is coming next. I don't know what those unanticipated alternatives are going to present themselves as. Anything is possible. That's a scary thought because anything IS possible. Anything is too big of a word for me. I prefer to keep things small and manageable but God seems to like BIG things for me which I didn't anticipate at all.

Friday, September 2, 2016

I'm a huge fan of sugar! I love sugar in all its various forms- straight up, pure, unadulterated, cane sugar, the 'herbal' natural sugars and even the sugar substitutes. Corn Syrup...love that too! Sugar makes everything better! I love to sugar coat my life.

I have made sugar coating my life an art form really...I've been doing it for decades and it really has worked out well. It worked especially well when my kids got sick when they were little, when I could still manage their life for them and everything was made better with ice cream, match box cars and new barbie dolls.

Until recently...

I avoid writing because I have seemingly run out of sweet things to say. I have lost my perspective and I have had to come to the uncomfortable conclusion that life for this little weary family is hard and even bitter- I would be happy saying it is bittersweet because even a little bittersweet isn't bad.

The low blows are happening at alarming rates. There are blessings too...don't get me wrong but even those are becoming hard to pick out from the line up of intruding problems. It never use to be so hard to see the blessings. Now, they come disguised. The kids are getting tired of the way I try to sell them on the blessings- like a bottle of Snake Oil with huge promises. You can't blame a mom for trying to feed them a steady diet of hope when all they have been noshing on is despair.

"Look at that!! We didn't lose one single sock in the washer today!" That is about what I get excited at these days.

OR

"Hey, no one lost consciousness today! You kids rock!"

That is always met with eye rolling- which they are really good at!!

I got the official report on Spencer's 'incident' last week. I love that they didn't just say he 'died'. Instead they said, "11:22 the patient was without a blood pressure or a heart rate. At 11:24 a blood pressure was detected." It doesn't sound so bad when they put it that way. Like he just misplaced his blood pressure and heart rate...no problem, we found it again in no time!

And that is where part of the problem is. It was a dramatic moment. For me. For Spencer. For all of us. The few people who have heard of our tale say things like- "Well, he's okay now." and while I realize that is the obvious thing to say and the well meant thing to say, he is not okay. Not one part of what happened was okay. It wasn't okay last week and it's not okay this week. And so there is this huge gap between what each of us are feeling and how people around us respond. A complete disconnect, a different realm and a total breakdown in communication and that, in some ways, feels even harder than the actual event.

Not only is this the case from outside of our home but even with me! I don't know how to treat Spencer. I don't know if I should act the way I feel inside or do what I always do and sugar coat it and say things like, "Well, at least it happened in the hospital and not while you were driving!" You know, come up with all these other observations, which really only serves to distract from the one thing that feels terrifying and too big to approach. So, then Spencer feels a disconnect too and this in- congruence is mind numbing and it doesn't validate his complete fear and overwhelm either.

So, we in a fumble, not very good at life right now. We are stumbling and tripping over ourselves and there is an undercurrent of despair and extreme fatigue both physically and mentally. And every time he leaves my sight, my insides churn but I know I have to keep him in God's hands and trust that he will be taken care of. So, it's business as usual.

Last night, along with the final reports came the final diagnosis- basically, Spencer's natural 'pacemaker' is failing to respond to his heart needs properly. He also has what they call an ST Elevation and Early Polarization. This condition is the one you see on an MSN headline when the seemingly healthy young adult drops dead on the basketball court- sudden cardiac arrest. It is the worst of the electrical heart problems a person can face. Spencer has that. Can they fix it...not sure. Our pacemaker consult is still 2 weeks away!!

Sam's heart is struggling too- more increased pressure in the right side. We have watched this steadily increase over the past two years.

The most frustrating news of all? Both Spencer and Samuel's immune system panel came back looking as bad and worse than Shelbie! We are waiting for our Immunology consult for the boys but I am assuming they will both have to start the same transfusions each week that Shelbie does!! All that to the tune of nearly $40,000 a month!!!

Let that sink in...$40,000 a month to give my kids a little better quality of life. I am a little worried and overwhelmed. It's getting harder to see how I can keep doing this.

The blessings are there...just hard to find like a really good game of Hide and Seek. I'd like to say I will keep playing but honestly, some days are hard. Some moments are harder. I sure hope that this heaviness lifts soon.

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"For a small moment have I forsaken thee, but with great mercies will I gather thee...I hid my face from thee for a moment, but with everlasting kindness will I have mercy on thee, saith the Lord thy Redeemer...For the mountains will depart and the hills shall be removed, but my kindness shall not depart from thee, neither shall the covenant of my peace be removed, saith the Lord that hath mercy on thee.

Oh thou afflicted, tossed with tempest, and not comforted! Behold, I will lay thy stones with fair colors, and lay thy foundations with sapphires. And I will make thy windows of agates and thy gates of carbuncles, and all thy borders of pleasant stones...great shall be the peace of thy children. Thou shalt be far from oppression for thou shalt not fear, and from terror for it shall not come near thee." 3 Nephi 22:7-14